Living with the pandemic has been difficult for everyone: the isolation, the need to wear protective gear such as masks and gloves, the adaptation to work or learning from home.
For those living with or caring for someone with severe autism, these challenges can be exponentially more difficult.
“Wearing gloves or masks, you know, something like that? It just doesn’t happen here,” says Feda Almaliti.
Almaliti is the mother of 15-year-old Muhammad who has severe autism. She is also the Vice President of the National Council on Severe Autism.
In an emotional conversation with NPR, she describes the toll the current crisis is taking on her family and others like hers.
“Mohammed is an energetic, loving boy who doesn’t understand what’s going on right now. He doesn’t understand why he can’t go to school. And school is one of his favorite places to go. He doesn’t understand why he can’t go one walk into the mall as it was one of his favorite things to do. He doesn’t know why he can’t walk in the park, why he can’t go down to the grocery store, “Almaliti says. “So he’s incredibly confused in this time when we’re all confused, but he really doesn’t understand it.”
Here are excerpts from the interview.
How does distance learning work for your son who has limited language and other difficulties?
It doesn’t work for him. And I don’t think it works for a lot of kids like him. Our children need highly structured, one-on-one, specialized teachers and staff to teach them. We cannot do this via the Internet.
You wrote an essay and cited a University of Wisconsin-Madison study that found mothers of children with autism experience stress levels comparable to martial arts. And that’s before you put a deadly pandemic on top of things.
That’s the ignorance. … We don’t know when it will end. We don’t know what’s going on, and doing it with autism at home makes it even harder. The only support I get to get through it is through colleagues with autism. We have zoom calls and we try to find humor in this thing. … We’re just trying to lean on each other to get through. Because I can’t do it alone. Nobody can.
What about the rest of your family? How do they do?
They do the best they can every day. … But I don’t know how to accurately convey, it’s really hard. … It’s really hard because I almost feel like nobody hears us. Because my son doesn’t really talk. He doesn’t talk. And I should be his voice. And no one listens to what’s happening to our families. You know, nobody gets that we’re just as vulnerable as coronavirus people. Coronavirus comes and goes. Autism is here to stay. …
We desperately need extra help to get through this. And I am convinced that autism supporting workers, helpers, their teachers and caregivers are as important as nurses and doctors and should have the same living space. People do not understand that for our families, caregivers are our first response. Special schools are our hospitals. Our teachers are our fans. And we cannot do this without them.
Listen to the full interview on the audio link above.